They're at the top of their games: football stars, basketball phenoms, track stars, cheerleaders, team captains. Then, in what seems like a punch to the gut, the young athletes are swept into a vortex of medical tests and terrifying diagnoses.
Their identities, dreams and sense of control may take a hit. At St. Jude Children’s Research Hospital, staff members help these young athletes grapple with the complex issues that accompany disease diagnosis and treatment.
Many St. Jude patients previously participated in sports—either on a recreational basis or at a competitive level. But diagnosis and treatment may affect their self-image.
“When teens come to St. Jude, they already have an idea of who they are; what their interests are,” says Jaime Moran of St. Jude Child Life. “Suddenly, so much is out of their control. They feel a loss of normalcy and have left behind friends and activities that they truly love.”
Those feelings often spark fear, angst, uncertainty.
“As an athlete, a huge part of their identity is altered by that diagnosis,” says Jessika Boles, also of Child Life. “People know that person as part of a community of athletes. So the teen has questions: ‘Who am I going to be now? What are people going to think about me? How are they going to know me? How do I make a name for myself?’
“A lot of what we do in Child Life is help these teens find ways to explore their identity and find other activities that interest them.”
It’s amazing to work with these families. These kids are so resilient and so full of life. While I’m helping them and teaching them, they are teaching me just as much every single day.
Angela Corr, DPT, Rehabilitation Services
How much can I handle?
Upon arrival at St. Jude, patients and their parents may initially be timid, uncertain of how much physical activity they can handle during treatment.
“A lot of times, we must educate our parents and families and let them know it’s OK for the patient to remain active; in fact, it’s better in the long run,” says Angela Corr, DPT, of St. Jude Rehabilitation Services.
The sky’s the limit
Staff members first help patients define their personal goals.
“It’s all about quality of life,” Corr says. “What is going to make them happy? Then we begin working toward moving them in that direction. With motivation and the right tools, they can often return to doing what they were doing before. If the patient is on board and medically able, then really the sky’s the limit.”
One young man who enjoyed skiing and bicycling was determined to ride a bike after his leg was amputated. He worked with staff in St. Jude Rehabilitation Services to create a plan. Less than two months after surgery, he was back on the bike.
Another teen who was a state bowling champ and basketball player is awaiting surgery to remove a tumor from her leg. Meanwhile, she is participating in a study to evaluate whether physical therapy that occurs before an amputation or a limb-sparing procedure will help her have better function afterward.
Janet Adams, a physical therapist assistant in Rehabilitation Services, says staff must take patients’ interests into account to optimize therapy.
“One of the things that helps motivate our patient athletes is using a creative approach to treatment, incorporating the type of sports they’re involved in and modifying them as needed,” Adams says. “For instance, with a varsity basketball player, we have incorporated basketball into our treatment sessions.”
New vistas to explore
Sometimes, goals must be altered. In those cases, St. Jude staff help patients deal with their grief, adjust their expectations and choose new activities that can bring them joy and fulfillment.
“Through consistent, therapeutic presence, we help teens either develop a plan to continue with their sports or we provide opportunities for them to explore other things that are fun or might be physical in a different way,” Moran says.
Help often comes from peers, through relationships honed in one of the hospital’s Teen Rooms—safe environments designed just for them. Through casual conversations and planned events, participants can empathize about losses and challenges, helping one another process changes and possibilities.
“They discuss some really big, heavy-hitting topics,” Boles observes, “complex questions about emotions and identity and thoughts about treatment and spirituality and connections to self.”
Often, patient athletes discover exciting new options they could never have envisioned. Some become artists. One former runner began writing a novel—a marathon of a different sort. Some teens demonstrate their athletic skills through playing online sports matches with other patients. One football player became the team videographer for his college team, traveling with them to a bowl game. Cheerleaders who lose their range of motion may learn to make adaptations so that they can still participate.
“I have one patient who played football,” Boles recalls. “He prided himself on being big and bulky. After treatment, he wasn’t able to play football any more, but he returned to weightlifting, because it was something he enjoyed. Now, every time he returns to the hospital for a checkup, he gives me an update on his neck circumference.”
Regardless of the techniques they use to help young athletes, St. Jude staff members agree on one thing: they love seeing patients meet challenges head-on.
“There’s nothing like seeing the happiness on their faces after they meet a goal, even if it’s something as simple as sitting by themselves for five minutes while we play a game,” Corr says. “There’s nothing that can beat that. It’s amazing to work with these families. These kids are so resilient and so full of life. While I’m helping them and teaching them, they are teaching me just as much every single day.”
Angela Corr, DPT
Abridged from Promise, Spring 2015